Thursday, July 19, 2012

But She Never Talks About....

I just finished reading Before I Say Goodbye, by Ruth Picardie.  The book was published in 1998 and is subtitled, "Recollections and Observations from One Woman's Final Year."  It's the story, told in personal e-mails, letters and a few columns that Ruth Picardie wrote about her experiences, of  a 32 year old woman, married, living with her husband and 1 year old twins in London, who is diagnosed with breast cancer. 

Ruth Picardie was a freelance writer and a former editor, a spunky, rather sassy woman who was able to capture in her writing the wide range of emotions that she experienced as, at age 32, she tackled an ultimately losing battle against breast cancer:  chemotherapy, radiation treatments, alternative medicine treatments, hair falling out, nausea, and the myriad of other indignities that she bravely and sometimes funnily endured in her final year.  She continued trying to make life as normal as possible for her children.  She wrote about how pissed she was that she wasn't losing weight - sort of a "if I have to have cancer, can't I at least be skinny without trying?" sort of thing, and about having a crush on one of her oncologists.  She wrote about suddenly finding shopping therapy particularly helpful, especially for expensive cosmetics.

But one thing she never wrote about was being worried about medical bills or about what her illness was doing to the financial security of her husband and her children.  She NEVER mentions not trying a medical treatment because it's too expensive.  She undergoes 2 rounds of chemotherapy and at least one 6 week course of daily radiation treatments.  She takes multiple medications and undergoes numerous tests and scans.  She stays in the hospital several times and, at the end of her life, is in and out of hospice for the last 2 months.  And she never mentions paying a dime for any of it.

Make no mistake, sometimes Ruth was mad as hell at the National Health Service.  Of course she was going to have been angry - she was a 32 year dying of breast cancer and nothing they did seemed to make much difference.  Of course she would have turned at least some of that anger on the people doing her primary treatment.

Ruth talks about how much all the alternative therapies she tried cost:  2500 pounds (approx. $5000) for an initial consultation with a recommended "complementary medicine guru" and then much more money over the course of several months until reports of the rapid spread of her cancer convinced her that she was just wasting their money.  Then there was a Chinese medicine regimen..for 50 pounds (about $100) each week.  Over the course of three months, she went to at least two different "healers" for several sessions each.  In her last full column, she says that she doesn't think any of this helped her one iota - and certainly not as much as the (self-discovered and prescribed) retail shopping therapy did.

In that same column where she discussed how much she had spent on the (ultimately useless) alternative therapy, she wrote, "To be fair to the beards [alternative medicine folks], mainstream treatment from arid white-coats has utterly failed, too, but at least it's a) free, and b) you don't have to listen to Vangelis in hospital."

When the cancer spread to her liver and lungs and the oncologists figured there was little they could do to halt the progress of the cancer, Ruth was visited (without asking for it) by a government social worker and given a disabled car sticker, a housecleaner who came twice a week for 2 hours each time (paid for by the government), and about $100/week disability living allowance.  Not much, maybe, but surely better than getting nothing but bills and insurance statements when you're dying.  Know any country where THAT might happen?

At the end of the book, Ruth's husband, Matt, writes the final wrap-up for the book.  He wrote about a year after Ruth died and he was scrupulously honest, as she was, about his experiences.  He admits to not always being the support to her that he wanted to be, about the stresses it put on their marriage, about what it was like as she started pulling away from him and even from the kids, in preparation for dying.  But he never mentions money or bills or stressing about whether they'd be unable to pay for their apartment or her medical care or the retail therapy she was treating herself to.  About whether they'd have to choose between drugs to fight her cancer or food to feed the family. 

Ruth Picardie died on September 22, 1997.  I don't know what health care changes have been made in England since then, but I'd still bet a dying woman doesn't have to worry as much about paying for the process of her death in London as she would in Wichita, Kansas, or in any other place in the United States.

Illness and eventual death are extremely frightening but inevitable parts of living for all of us.  It's hard enough to go through being seriously sick without feeling that your illness and/or death is going to totally leave your family bankrupt and potentially homeless.  When are we, as a nation, going to wake up and realize that ALL of us are human, ALL of us will get ill and die eventually, and ALL of us deserve to deal with that in the best way we can WITHOUT worrying about paying for it???  When are we going to wake up and realize that the only system that makes sense is a single payer system where 30% of the costs don't get eaten up in administration?  When are we going to wake up and realize that making lots of money off health "care" means that true health care must be denied for many of us?  When are we going to wake up and realize that only by having everyone, old and young, sick and well, in the same pool can we spread the costs around fairly and reasonably and provide needed care for all of us?

And, most of all, when are we going to realize that having "health care insurance" doesn't insure us against anything, least of all against illness and death?  We are all going to get ill and die, so let's be honest with ourselves...and provide at least a basic level of health care for all of us, so we can meet that frightening time of life with all our focus on our fight for life.


Jason said...

I couldn't agree with you more. There is a huge amount of confusion and misinformation on this topic, fed by those who profit financially or politically from people's fear. Every other democracy in the world has some kind of guaranteed health coverage. Serious illness should not also mean financial disaster. Also, people should be free to switch jobs or start a business without worrying about whether they will be able to purchase affordable insurance.

Gaia Gardener: said...

Another good point, Jason. Hmmmm, who might benefit from people unable to leave their jobs due to health insurance????